Spectrum 10K: Project misses another of its own deadlines over consultation report

Spectrum 10K, the controversial Cambridge study which paused recruitment last year following concerns over its collection of autistic people’s DNA, has missed another deadline it set itself as part of its ongoing consultation process.

The project, which looks to investigate “genetic and environmental factors” which contribute to autistic people’s wellbeing, said it would publish its report from Phase Two of its consultation with the autism community on Friday.

However, as of Saturday afternoon, both Spectrum 10K and independent community engagement consultants Hopkins Van Mil (HVM) are yet to release the document, which relates to the co-design of the consultation before it launches in January.

The first phase, which gathered thoughts on who should co-design the eventual consultation, took place between December 2021 and February 2022, while the Phase Two co-design concluded at the end of October.

An update from Spectrum 10K last month stated “the final Phase 2 report will be published on the HVM and Spectrum 10K websites” would be published on Friday, while “the consultation will be publicised” and promoted from 21 November.

Neither are yet to happen.

The wider timeframe saw HVM commit to sharing the draft Phase Two report with Spectrum 10K on 15 November, before passing it on to Phase Two participants on 21 November with comments, amendments and feedback integrated into the draft from Monday this week.

It isn’t the first time Spectrum 10K has missed its own internal deadlines, after academics said in May that the third and final consultation stage was “expected” to take place in “September/October 2022”, when it was later confirmed it would happen at the start of 2023.

Update – 13/12/22: In a statement to Liam O’Dell, a Hopkins Van Mil spokesperson confirmed the Phase Two report would be published by Monday 19 December “at the latest”.

“We have wanted to give those who took part in Phase 2 time to comment on the draft report if they wished to,” they said.

While no payment is expected or necessary to access this content, if you would like to support Liam’s independent journalism, you can send a tip via CashApp.

You can also sign up to Liam’s newsletter, where he will share updates on his first non-fiction book which is due to explore the subject of autism research in detail.

This report is the latest in his series ‘The Spectrum 10K Files’. Read the previous articles online now.

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